Good evening! I am so happy to have found this forum. I am the 41 yro daughter of a 66 yro. Both my parents were diagnosed with cancer on May 20 2017. My dad's prostate cancer surgery went well on July 13 and he is recovering quickly. My mom's cancer surgery was on July 24 and she is now home with hospice care.

She has stage 4 buccal mucosa squamous cell carcinoma. During her surgery, they removed an area the size of the palm of my hand (3 in diameter) and her lower left jaw (mandibularectomy) from her front canine tooth to the condyle process in the back. They did not rebuild the jaw. They did a neck resection and that has healed nicely as well as her tracheotomy site. She had a skin & tissue graft from her left arm to rebuild the tissue in her mouth.
They recommended 35 treatments of radiation as it is in her bone. She declined when we soon found out the cancer has also spread to her trigeminal nerve (perineural invasion). She chose to go home with hospice and decline any further treatment. (When she went in for surgery, the doctors thought it was only stage 2. It had grown that fast since her CT scan on June 23.)

She is desperate for information about what to expect. The doctors have given her 6 months at best, but all they tell us is "every case is different" and that at the end she "willnot be able to eat or swallow and willneed to use her peg tube for pain meds."
Has anyone else experienced or had a family member experience the cancer spreading to the nerves?

We have been told that it will move backwards (retrograde) towards the brain stem.

Prayers to you all, and thank you in advance for any information you can share.